A shrew about the floor: or, I have to write this down because I feel like crying again

So I had the meeting with the geriatric care manager (I think I’m going to call her the GCM) and it was pretty helpful. She has a few ideas already, and she is going to talk to all dad’s doctors and come out to the house to evaluate our entire living situation.

One of the things she said is that it’s important to know what kind of stroke dad had (we only ever got vague information on this) and what kind of dementia he may have, because the nature of both of these impact ability to learn. I’ve been dealing with him on the assumption that he can learn or relearn things, because that had been the fundamental assumption of the speech / cognitive therapy he had, but those assumptions may be wrong, in which case I should focus on finding workarounds rather than trying to coach dad about stuff. Right now I can’t tell if he can’t do something, or won’t do it, and the results are exasperating. She also said that the clearer diagnoses might be useful in communicating with dad, i.e., if he knows something more specific, we could set up clearer boundaries and he could potentially be more cooperative with a clearer situation. Finally, she said I need to make a list of things that have to change for me to stay in this situation, because if it could persist indefinitely I may be putting my mental health in danger if some things aren’t corrected. (She’s right about that; I am showing clear signs of depression and have been for weeks.) She pointed out that if we paid someone to provide 24 hour care for dad, they would have weekends off.

So, case in point, yesterday.

Dad has always been, shall we say, inconsiderate about certain things. It definitely falls into the female purview to keep the floors clean and the male purview to walk wherever he likes. There are three entries into the house, two of which have chair stations for putting on and removing outside shoes, but he doesn’t like either of those options and prefers to walk into the house as is through his preferred entry, without considering what’s on his feet. This has always been true and it’s meant that keeping the floors clean in our house is an ongoing task. More than once, even before the stroke, he’s walked in dirty boots over a floor while I was mopping it and then been stunned when I expressed anger or frustration.

So my workaround for that, again, before the stroke, was simply to start wearing socks and shoes in the house and mop on a set schedule. I could tell this was making him angry as the floors have sometimes been quite dirty during the intervals, but I I had decided I was ready for a confrontation, rather than turning into a shrew about where to walk every single day, or constantly mopping. Remember: I never wanted to have children.

Post-stroke, dad has gotten much more concerned about the cleanliness of the house. It’s not clear why but the neurologist thought it might be an attempt to control his environment, or related to memory loss (he can’t tell if a mess has been there for an hour, a day or a week). That doesn’t mean he actually cleans it. Rather, he creates a situation that makes it impossible for me not to clean up after his efforts. So: if every other dish is in the dishwasher and it’s running, but there’s a dirty roaster (say) sitting on the stove, he’ll fill the kitchen sink with water and soap and put the item in the water but not wash it. This usually happens on days when I work so when I get home, there’s a grimy dish or dishes sitting in cold water. Sometimes with nice quality knives to accompany it. Often in the “wrong” sink, i.e., I have to unclog a drain as well after removing all the stuff from the sink. I have asked him politely many times not to do this, now, and the only solution has been to wash dishes constantly or hide dirty dishes elsewhere. Which is nuts. When I do it it makes me feel nuts.

But I’ve felt like — if the only way to get him to do something the way I want or need it done is to scream — I don’t want our entire relationship to consist of me screaming at him. That’s abusive. We have a lot of dilemmas like this, though.

We did have a cleaner for two weeks, until dad scared her off.

Friday, I was meeting with the GCM in the morning. Her advice was to treat him as if he can’t help being this way and can’t learn, i.e., as if I am really dealing with an infant, and find workarounds later. So, while I was away, dad apparently decided to tackle the kitchen floor / hard surface, which runs from our kitchen to tile in the porch room to the laundry room, hallway and bathrooms. However, he did not sweep before he mopped, so when I got into the house the entire hard surface floor was covered with some kind of crunchy layer that had been mopped onto the whole floor: all the mud from the entryway had been spread all over the house.

Being wise now, I said, what would the GCM say? So I took him to Flower’s, came home, and cleaned the entire floor. This was exasperating not only because i hadn’t programmed an hour of cleaning into the day, but also because I first had to spend twenty minutes looking for the cleaning supplies, which were scattered everywhere (another dad has never done: put things back where they belong). 90 minutes later, I got the floor spic and span (not that that mattered much because he just walked into the house without taking his boots off when I picked him up), but I thought, what I need to do is get my own cleaning supplies and just keep them in my own room so that I always know exactly where they are. This will cost us about $70 to start, but I will never be angry about the mess and then angry again because I can’t find the cleaning supplies.

So, I put the stuff I wanted into my grocery order for Saturday morning (when we always get it). Usually I go by myself but dad needed something from the hardware store so I took him along.

Stupid me. Of course, he noticed all the stuff when we got home.

“Why are you buying all this stuff?” He was really angry. “You’re just throwing away my money! We have all this stuff already! And the house is still dirty because you never clean.”

O to 60 in 0.5 seconds.

Lately my response to being screamed at has been to scream back. I’ve been able to stop myself from starting with the screaming but I haven’t been able to control my responses yet.

So I yelled. “Normal people put things back where they belong. I need to know where our stuff is. I have to clean up after you all the time and I can’t live like this!”

“Well, you should just ask me!” he screamed back.

“I don’t have time! Haven’t you noticed that I spend every second of every day either working or dealing with your problems?”

He stomped off and I sobbed.

So yesterday, I was vacillating between anger at him for being impossible (which is probably increasingly not his fault) and severe annoyance with myself for not remembering to hide the purchases from him or arrange the situation so he wouldn’t notice it.

Today, I was feeling really guilty for losing my temper.

Until — after I put our lunch in the oven — I noticed that he’d shut off the stove timer. When I said, involuntarily, “What happened?” he said, “The stove isn’t supposed to look that way so I turned the whole thing off.”

I just started sobbing and left the room.

I’m calmer now. I put one of those small timers like they use at Starbucks into our grocery order for next week — I can put it in my pocket and no one will ever see it.

And the cleaner is going on the list of “absolute conditions.” Hopefully the GCM can make that clear to him, because I don’t think I can go on this way.

Go to your county health department and see what they have to offer. The 5 years I was unemployed, I went through them to get health care. Back when I was first divorced and was straining to keep Spawn covered, I went to our county health department and was able to procure someone to talk to for a few months. That helped a lot. I realize every county is different and things change over time, but it might be worth a try!

I can’t generate new paper trail until the new insurer picks me up or I’ll be excluded from coverage on the basis of unreported pre-existing condition for that thing for at least six months. It’s only a few more weeks.

I hope that you gets some answers to what really is your dad’s diagnosis and some type of help. You are in a very difficult place of what to do. I hope both the answers come soon and maybe you can get some respite time alone to unwind. I will be thinking of you as you work though this rough time in your life, it’s never easy being a caregiver.

According to her, some of this could be explained by vascular dementia (that he is a bit like a radio station tuning in and out), as opposed to stroke consequences. I’d be up for another round of more exact diagnostics just to know that. I appreciate your support.

There are so many different types of dementia and they present differently. You really need to know what type to make better sense of what is happening with your dad. There is also the type of stroke your dad had and what id happening in the brain with that type. So much for you to learn and to take in. Always here to give support to you.

You’re in a very tough situation and I would be surprised if you didn’t get frustrated and lose your temper. It sounds like very good advice to find out the exact prognosis and to adjust your expectations and your methods based on that.

As I mentioned to you before, my younger son is neurologically different, being on what you might call the high-functioning end of the autism spectrum and that’s combined with ADHD, anxiety, and very low working memory. I have to deal with him the way he is, which does mean that my life is structured differently than it might otherwise be. Someone at work said to me, “Come on! He’s 17! He should be managing this on his own!” And yet, he can’t. Some of it he can probably learn (I hope), but some of it I and he have to find work-arounds for. The biggest thing for me is that he makes me late for everything and can’t seem to understand the impact or to change, even though he feels sorry afterwards. I could just leave him, but then he likely wouldn’t go to school and wouldn’t end up with a high school diploma.

I try not to yell at him but I’m not very successful because the stress is a lot (even though he is a good companion in a lot of ways). When you lost your temper sounds a lot like how I’ve reacted and then regretted — “Normal people would move faster when I tell them we’re almost out of time!” “Well, sorry for not being normal.” I, too, have let him know that my life is spent either working or helping create a time and space for him to get through school. And then of course I feel terrible.

I mention all this by way of sharing that I understand at least somewhat what you’re going through and how tough it is to keep your cool and maintain any sort of positivity. I do hope the GCM really helps you come up with a plan that will work for him, but mostly for you. You may want to see someone just for you, as well, although it sounds like if you could get some respite, it would really help — cleaners, carers, brother, etc. Hang in there. I hope it gets better. Sending hugs.

Sending you a big hug — we have time issues, too, and they are non-trivial — to the point that I wonder how I’ll ever work full time again. And I feel horrible when I say “normal people” but I can’t seem to stop myself sometimes.

Thanks. I am very lucky that, even though my work is very intense, for the most part I have a lot of flexibility in terms of when I work. And I agree, as soon as the words “normal people” leave my lips I regret it. Both they and we are doing the best we can.

I understand what you are also going though as my youngest son who is 18 has autism. He also is high functioning be can go at his own speed and not always understand a list of things told to him. My husband can get flustered with this but I have learned that that is who he is. I also don’t go with normal because really what is normal?

Yes, that sounds familiar. And we are all normal for us. My son was only diagnosed a little under three years ago. It was a great relief for him to understand why he was different. The psychologist who diagnosed him said that she doesn’t like the term “high functioning” because it minimizes the amount of work that both the child and the parents have had to do to allow him to function in the world at that level. I thought that was interesting.

My son showed signs that all was not right a 6 weeks. He was about 3 when we got the diagnosis of PDD-NOS Pervasive Developmental Disorder-Not Otherwise Specified, as they didn’t want a label so young. At 5 he was given the diagnosis of Autism. Until we had some type of diagnosis I felt that I was going crazy because I could not help my son. Today he is who he is and it fine as he is ok with who he is. We are looking to the next chapter of his live as he graduates high school in May. I know he is scared but we will make it though that too. now everyone falls under autism as how they diagnosis has changed.

Looking back, a lot of idiosyncrasies seem obvious signs, but it was maybe masked by ADHD symptoms. My son is okay with who he is too, especially since being diagnosed and having accommodations in school. I’m sure you are as glad as I am that graduation is finally upon us.

Yes glad we finally made it to graduation but sad for him as school has been his live since 3. On Thursday he is coming to tour the college that the whole family has gone to, his dad, 2 older brothers and myself. The middle son and I graduate in May. I will not be there as I have clinical this semester and have been at campus. He can live with oldest brother so he will still have a safety net while getting out on his own. He don’t drive and that could be a problem but hopefully sort that out if he decides to go on to college at this time. He wants to be a writer (has a book wrote but not published at this time) and a artist both things he does well. He also loves history.

My son can’t wait to get out of high school. He loves to learn, but he just doesn’t fit into the way they want him to learn or show his learning. That’s cool that your son already has a book written! Mine wants to get into music production and sound engineering, which he’s been doing this year at school. We’re looking at a school of recording arts, or a year working first. In the summer, we’ll get him some driving lessons so he can work on his driver’s license. How did your son like the college? And what are you studying?

To Servetus and SueBc – I think you would have to be saints not to feel angry sometimes, and not to lose your tempers and shout. I know I would. I’m moved by your stories and applaud your strength. Nothing useful to add but sending hugs to both of you.

I echo the thoughts of others who have stressed the importance of utilizing your GCM and getting some help in the house. Until that happens, though, here’s my two cents (fwiw). I have kids in my class every year who are challenges, and occasionally I will have one that I am convinced has an undiagnosed special need, such as outlined by SueBC. In that circumstance I find it somewhat helpful to just think to myself that those children are incapable of changing their behavior. They physically are incapable of sitting still for five minutes or of remaining silent to listen to instructions. While it doesn’t change behavior at all, it changes my perception and expectations and enables me to stress less about it.

I’d be in the floor too, absolutely. The combination of his caring more about the house & yet unable/ unwilling to do anything constructive about it would be intolerable for me as well. A more specific diagnosis is important, both for him and for you. I hope the GCM can help you with this as well as at least finding options to keep you from finding a different mess to deal with every evening when you get home. (Or even the same one with lack of appreciation.) Knowing he can’t help it only helps with part of the issue. You are so worth it. Praying & hoping toward these ends. (((Hugs)))

I think that gets to it — if there were stuff he couldn’t do, whatever, we’d easily find a workaround, but it’s that he also stands in the way of the workarounds I do find. We’re headed for a similar battle over the yard, which has to be dealt with this year.

You’re really in a tough situation. I remember the summer before he died I went over to cut the grass, my Dad no longer was able to because of his Alzheimer’s. He kept taking the gas cap off the lawnmower and checking the gas level for me. Each time I’d say ‘looks good Dad, lots of gas’. But he would immediately do the thing over again. Over and over. I went off for like 2 seconds to get a broom or something and when I came back he was standing there but no gas cap. Anywhere. We still haven’t found it two years later. It didn’t annoy me because I know he meant well and couldn’t help it and I had the luxury of going home in a few hours so my patience never wore thin. My mother, though, would be very frustrated with him – but she was with him 24/7. She was determined he did as much as he could for himself as long as he could – it would take an hour for him to be dressed and out of the house when she needed to go out. It was so difficult for her to accept that he was no longer capable of things, and totally incapable of learning anything new. It was difficult for her – she would get angry and say ‘he’s doing it on purpose’ – it was difficult to accept he was not the man she had been married to for 60 years anymore. Something as simple as using a walker, putting one foot in front of the other while putting his hands on the handles and moving forward – he was beyond grasping how to do that by the time he needed one. He could not learn the simplest things anymore.
He had a book he used to write in and I thought he still was – till one day I looked in it – all the pages were blank! Fortunately for my mother my father was very easygoing, but even then it was frustrating and aggravating to her and she would feel mean sometimes when her temper got the better of her. How you hold down a job and cope with the house, cooking, chores and your father with all that entails every day of the week is beyond me. I’d be on the floor with a nervous breakdown by now. It seems the professionals are giving good advice and you’re doing all you can do – asking the right questions and trying to find ways to cope – your mental health and quality and enjoyment of life is so important. I hope you find some relief.

My retroactive sympathies to you both — the repetitive stuff is really aggravating (that’s something we’ve been dealing with with taxes and it has the tax preparer confused now, too). I think part of what’s confusing is how much of the weird behavior seems like it’s just an extension of the person’s personality — so it really does seem like they are “doing it on purpose.”

I don’t think you can keep doing what you are doing either. You are drowning. Your situation sounds so frustrating and soul-killing, I hope the fixer can make some things better. You are taking such good care of your dad, and I don’t think he realizes you are all that stands between him and assisted living (to be blunt). Of course you can’t tell him that, it would just start an argument. You know that if you don’t change course and take better care of yourself, you cannot take care of him. Please put yourself first once in a while, and don’t feel guilty about it.

I am so sorry about this situation. I can imagine how you must be feeling helpless. I am lucky, my father is nowhere near as difficult as yours and I still get annoyed sometimes. I hope your GCM can provide further advice. hugs

I think you know you are near your breaking point. I would have caved in long ago, you are being really strong, patient, and caring. But the situation is getting worse and it’s time to get help and arm yourself with more knowledge of how to manage him. I am basically echoing what everyone else has said here.
And here’s a hug too. ((((hug))))) As I always say, if you lived closer, I’d be taking you out for a drink to get you out of there from time to time.

The last couple of weeks have been bad (probably because they are also the worst weeks of the semester). At the same time I don’t know what will happen when we really do have to spend 24 hours a day together. Or how I could possibly start working full time in another job at this point. Feeling trapped.

I’m so sorry you have to deal with this, it’s so hard! Getting the GCM in is a great start to getting help and making things better and hopefully it’s the way, utimately, to sanity. Hang in there. (((Hugs)))